Managing symptoms for a �good death�

[NRSKarenRN]

found at nursing 2006:

november 2006

volume 36 number 11

pages 58 - 63

managing symptoms for a "good death"

marylou kouch aprn, bc, msn

contact hours: 2.5* expires: 11/30/2008

What's a good death? Most patients facing the end of life say it means freedom from pain and other distressing symptoms. 1 as nurses, we can play a major role in easing their way to a good death.

Managing symptoms in the last phase of life is especially challenging because you probably won't have the benefit of diagnostic studies to help you assess signs and symptoms. But as a nurse, you bring unique qualities to the table: assessment skills, a partnership with the patient and her family, and the determination to bring comfort.

In this article, I'll present a case study to illustrate the most common end-of-life symptoms, including pain, fatigue, dyspnea, and gastrointestinal problems. Whether your patient has all of these symptoms or only a few, you'll learn how to keep her as comfortable as possible.

[finn11707]

thanks leslie, i'll give your thoughts consideration. though i feel i've forgiven myself, i know i am still feeling quite a lot of stress about the lack of support and committment from my management team- to both me and to this patient and others like him. these cases are difficult and take a toll on us --especially if we don't work as a team to best do what we can. several of the nurses came to me after the debrief with their personal statements of support and comments noting management's repeated refusal to listen and support around this very unsafe patient situation. as his casemanager, i know this one could have been done better.

i think this patient is happy it is over. he was very alone and very frightened as to what he might be facing as his disease progressed. i also believe in patient's right's to end their life if they deem this their best ending. but we must be clear in developing a plan as to how hospice teams will support them (and one another) through this ending--especially when there is not a right to die ruling in the state.

yes, it is hard work, but well worth the effort and the journey with many is a gift in many respects. i don't think i will ever give it up...just strive and insist that it be prefected...more respectful and awe filled. but then, i'm still learning.

...i did not know what to say, my mouth had no way with names

my eyes were blind,and something started in my soul,

fever or forgotten wings, and i made my own way,

deciphering that fire, and i wrote the first faint line, faint, without substance, pure nonsense, pure wisdom of someone who knows nothing, and suddenly i saw the heavens unfastened and open, planets, palpitating plantations, shadow perforated, riddled with arrows, fire and flowers, the winding night, the universe. and i, infinitesimal being, drunk with the great starry void, likeness, image of mystery, felt myself a pure part of the abyss, i wheeled with the stars, my heart broke loose on the wind.

by pablo neruda

[req_read]

Philosophically, there is often a fine line between discerning the difference between intervention and letting things run their own course.

When we see someone struggling with an issue that we have acquired some insight into, whether through our own experience and/or observation of others, then we ought to pass on what we have learned in the hope of rendering someone else’s journey less difficult. Often times, those who could benefit from our knowledge and training do not, for diverse reasons. When our efforts fail, we need to let that go. However, not trying… choosing to not offer the benefit of our knowledge & training… because we suspect they might choose to ignore it is getting into risky territory. And not offering help because we do not want to be bothered, or because it might be too costly for the agency, is getting into pretty shaky ethical territory. Then rationalizing it all based on the supposition that the way it played out was what the pt really wanted anyway… that it will all come out in the wash, so what the heck, don’t worry about it… oy!

If you give it your best shot and miss, that’s one thing. If you don’t even try, that is a horse of a different color.

Unfortunately, lots of hospices out there don’t even try. Instead they provide absolute minimum services while at the same time have made a virtual science of producing the precise documentation necessary to gain maximum reimbursement. I hear about hospice agencies like this (on this forum) all the time and have experienced it first hand with my wife’s Aunt.

I am happy to report that the hospice nurse that attended to my father did a good job (an LPN.) First, she got the nursing home staff into line and then she effectively addressed my father’s symptoms. She was supportive and helpful to my brother and sister by providing them with good explanations of what she was doing and why. It was job well done.

And yes, my father finally did cross over. He did so in his way; i.e. lingered beyond what anyone would have thought physiologically possible with virtually no apparent understanding or conscious awareness of what was going on or why. Perhaps on some level he did gain some awareness, but if he did, it was accomplished after he was unable to express it. Perhaps now that he is no longer tethered to a physical body he is more aware… we can only speculate.

In general I would think it risky business to suppose that death will somehow magically change the trajectory of one’s life… that somehow, “life” and “death” are qualitatively different. I think it far more prudent to suppose that the course one sets in life will, in all likelihood, continue after death.

By way of example…

There are those who expect that by creating as much pain and misery as possible in life (by blowing themselves up in crowded malls and killing as many people as possible) will somehow fetch them great happiness after death.

In life, misery tends to beget misery. In life, happiness tends to beget happiness. Why should we assume this basic principle of life takes a 180 degree turn after death? Assuming that causing great misery will somehow yield great happiness by the simple expedient of becoming dead is, I think, misguided.

My father lived his life with a very low level of self-awareness. He passed through his dying process with a very low level of self-awareness. This caused him much confusion, angst and isolation. Now, by virtue of his becoming dead, you would be hard-pressed to convince me that he has become… presto-chango… happy and self-aware. Life does not work like that. I am not prepared to think that death works like that either.

But let’s all hope and pray that I am wrong… that we will not reap what we sow.

Michael

[req_read]

P.S.

But if we are so fortunate as to avoid the reaping, one must then wonder... so what was the point of the sowing?

Michael

[leslie :-D]

michael, i never said the afterlife is a glory-filled journey of happily ever after.

i did say that it provides us insight...

addressing the hows, whys, whats.

i also believe it shows us how our actions (knowingly and unknowingly) affected others.

a wide learning curve awaits us, no escaping it.

but punishment?

no, i don't believe that.

i do believe these teachings we have yet to see, are so profound that it strips us of any remaining righteousness...

literally, we are new again.

afterlife isn't so much pink skies, fluffy clouds, celestial music...

but the land of opportunity, truth and love.

for me, that is heaven.

leslie

[finn11707]

That's the thing about heaven, afterlife beliefs, religious beliefs---we carry these in our hearts--all, decifired by our hearts, intrepreted by our hearts. It affects who we are and how we see and feel--and how we do our work. What is in our hearts is often a big part of the draw to hospice work. The hardest part is stepping back to allow full acknowlegement and respect for someone else's (perhaps odd) beliefs and yet, hold fast to beliefs that keep us strong and able to go forward in this work.

I came from a large family with 5 children, spaced about a year apart each, and 3 cousins who lived with us intermittently. We lost a sister in our teens. Mom and dad decided to 'fill/heal our gap' by opening our home to abused foster children. We had 4-5 children, ranging newborn to 5 yr old, at a time for many years. We all journeyed this time together but came out with very different perspectives on the journey...the impact of the 'fix' of foster children in our home during the years following Susan's death; even the way we grieved as a family drew some of us together and drove a wedge in for others. One brother, an incredible gymnist and athelete, majoring in PE changed his major to religion. The other, a gifted rock musician, changed to religious rock and lead the movement into highschools all over California. Dad receeded further into religion--almost unable to carry on conversations without adding comments about God. My sister and I both left organized religion behind and became nurses. She has worked ER and ICU her entire 30+ year career. Perhaps, struggling to avoid finding meaning about life through death.

I have shared my love of poetry in some of my posts...I recently sent one with a 'healing', loving message to my sister. She wrote back that she is finally gaining some insight about why she struggled so with dad's death; was estranged from and angry with our family for so many years, etc. But the poetry did not speak to her heart as it does mine--she wrote, 'thanks for the poems, but I really don't understand them...'

I still believe that love and non judgemental presence are truely the only universally understood Hospice languages, and the key to relieving suffering. Heck, even outside Hospice in the real, still defended, place we call 'living', it works pretty well. Now if I can just shut up.

[req_read]

Leslie… I didn’t think you viewed after death experience as bliss, but a couple of your remarks had me confused. No matter.

Punishment? No.

I view most religious depictions of hell as rather macabre marketing tools… getting people to show up and put money in the pot by using tried and true methods of fear mongering. Humans are perfectly capable… even adept… at creating their own personal “hell” by employing ineffective or counter-productive coping strategies.

Finn… first, don’t shut up.

Second, your family sounds like it would be a fascinating subject for a student of family systems. I wonder what you think about the notion that excessive focusing on religion… or “religiosity” if you will… is a form of addiction?

My brother’s and my world-views turned out, over time, to be remarkably similar… albeit arrived at via different fields of study. My sister however, is very different. Her role in the family was very different. She is a fundamentalist Christian… very different from us boys. Her role in the family was, “Little Sweet” (to my father.) She could do no wrong… nor was she required to work. She was born special… privileged. My brother & I worked… while she played. Whatever she did was wonderful. Nothing we did measured up.

In the long run however, my sister suffers more from her upbringing than my brother and I. She was always told she was special… but deep down she knew she was not… so she tries to hide who she really is… very cryptic about her true self. Her religious views replicate her upbringing. She clings to the view that she is special… will receive special treatment and consideration from her Father… just as she did from her father… yet deep down inside she lives in fear that somehow, someday, someone will discover that she is just a human being like everyone else and really not special after all. So she keeps an armor-plated social mask up at all times, terrified that someone might peak behind.

It seems ironic when people who have experienced great difficulty sometimes demonstrate more personal growth than people who have had it relatively easy. I had to work very hard as a child, so with my own son I did it differently. I let him have a fun and playful childhood. Now he does not know how to work, and as a consequence, is having a harder time than if I had made him tote that barge and lift that bail. The trouble with parenting is that by the time you figure out where you went wrong, it’s too late.

As we grow older and realize what screw-ups we have been there is a natural inclination to be far more accepting of others… to be more empathetic and compassionate. It is hard to criticize someone else when you know you were probably just as bad if not worse. A big part of the trick, in the end, is to be able to forgive and love your self… despite knowing who you really are.

Then again, you could work at avoiding becoming acquainted with your self at all… to deny it outright… that’s my story and I’m stickin’ to it… then attempt to go “whistling by the graveyard,” as the saying goes.

So great pain can cause great growth, while a life of ease can lead to great pain. Go figure! The solution seems to lie in the ability to elect to grow even when you don’t have to… to choose the difficult path of becoming more self-aware… consciously… by choice… without being forced into it.

But in a sense, even that is “being forced into it”… when you eventually discover that if you don’t choose the harder path, the consequences are likely to be worse.

Then, on top of all that, we discover we are immortal… which means this whole deal goes on and on and on… Dang! “End of life,” seems easier.

As it turns out, the only thing harder than being mortal is being immortal. Deep down we prefer a beginning, a middle and an end. But eternity? Yee Gads!

Michael

[Allow Mystery]

Dear Req_read

My condolences on the death of your father, thank you

for sharing your intimate thoughts and feelings, your self

awareness is extraordinary

Dear finn11707

I'm sorry for your stress with the lack of support from your

team, I applaud you in your strive for perfection and your

commitment to your patients, please do not lower your

expectations, but please forgive and continue the hard work

and Leslie, Thank you for your remarkable insightfulness and

your tremendous knowledge and wisdom, you have truly been a guide

[finn11707]

Yes, ALLOW MYSTERY, you are so right--it is much about forgiving and moving on. Not just for those we attend in their final weeks, but ourselves also. Those of us drawn to this work knew, even in the beginning, there is a great learning for us in doing this work. It is beautiful work, but hard work to do if you don't allow for acknowledging and addressing your own issues as they arise, then work to grow and mature with it.

I now see that forgiving a management team who is not always making the best decisions or offering the best support to its team is much like forgiving your family as you grow and begin to recognize their limitations and failings.

I have certainly found wisdom and developed self insights these past few weeks as I have read this meaningful thread since its inception in 2006.

Thanks to all of you who posted, especially to you Michael as the perspectives and wisdom you shared have resonated in me. (And, yes, we probably would make for a great family systems study!)

[finn11707]

i want to share another conscious death experience. j-- was a scholarly man who came from a well educated family. he was dying from advanced liver disease. his questions were few, but his wife had many and listened carefully to all our answers---dismissing some staff as 'not seasoned enough to offer us anything...' she directed our help and supported her husband lovingly and dotingly. (she later admitted she was a retired public health nurse) j-- moved gently through life review, visits with dear friends and family, even made outings to favorite restuarants the day after he asked me to tell him what the end hours might look like, he slipped into a dream like state where he remained for several days. he talked, laughed, made motions of running (he had been a marathon runner in younger days) and eating intermittently throughout these days, still interacting with his wife from his far away place. his end neared, he became quieter, he stopped eating food. one evening, a dear 'adopted niece' came bringing his lovingly prepared favorite meal--lobster thermador with champaigne. he had not eated now for 3 days, but his wife asked him if he wanted to wake up for this special meal and he said yes! that evening, they ate together with candle light and his loved classical music playing softly. he ate with relish, eyes still closed much of the time. he died several hours later that night.

mary oliver's poem when death comes tapped into j---'s wondering and knowledge-seeking spirit. i have seen several patients slip almost same day into thier final hours after reading this poem. he needed very little medication for transition periods that often require more with his diagnosis.

these are the experiences which we reflect back on after dealing with more troubled dying experiences in our patients.

i had a young woman--(younger than myself) who entered hospice care full of angst. she was surrounded by a loving husband and 2 daughters who knew her well and chose to support her wishes fully. she stroked a couple of weeks after admission to hospice and became fully dependent and furious--something which fully broke her spirit. she could barely speak, but loudly made her wishes known to me and to her family "...get me out of here..." we discussed options of supportive care, chaplain, medications for pain and sedation in varying levels for her high anxiety. none of the lower level meds touched her and she shouted "give it to me now..." when we discussed phenobarbital. it took time for the team to meet, discuss and clarify to family and patient what it means to follow this wish. everything in place, she died 5 days later with family gathered around and at peace in knowing they had fully respected her final wish.

"for the raindrop, joy is entering the river--

unbearable pain becomes its own cure.

travel far enough into sorrow, tears turn into sighing;

in this way we learn how water can die into air.

when, after heavy rain, the stormclouds disperse,

is it not that they've wept themselves clear to the end?

if you want to know the miracle, how wind can polish a mirror,

look: the shining glass grows green in spring.

it's the rose's unfolding, ghalib, that creats the desire to see--

in every color and circumstance, may the eyes be open

for what comes.

(ghalib translated by jane hirschfield)

[req_read]

finn…

Thank you so much for sharing. Your experiences are extraordinary!

Much of what is said by dying people, by poets and in religious literature is enigmatic… allegorical… metaphor. One has to intuit the meaning behind it. But one thing is not metaphor at all… it is cold, hard fact. And that is what you & Allow Mystery were discussing; i.e. forgiveness of self and others. The two are inextricably bound together… for the very reason that ‘self’ and ‘others’ are, da-da-da-da… the same. The concept of: as you judge others so shall you be judged… is cold, hard fact… not allegory, but fact.

In the proverbial “end” we judge our self. God doesn’t… He loves us regardless. The dying words of Heinrich Heine, poet, were…

“God will pardon me, that's his line of work.”

Precisely.

Questioning whether God loves us is absurd. The real question is whether… or not… I love me. And whether… or not… I love me is marinating in how I judge others… because we are all one.

Therein lies the great spiritual mystery… the great spiritual truth. And that great truth was passed on to us in the one, simple sentence that goes (roughly): As you judge others, so shall you be judged.

Which explains an awful lot of what we call “terminal anxiety.” The outward focus of our judgment is suddenly (during dying process) turned inward. Yee Hah! Ouch! Oy! Oy! Oy!

Judgment is a necessary thing. We have to do it. But it is well to be mindful… it is like playing with hand grenades. One must be very, very careful.

And when, as people who have chosen the profession of assisting the dying, we must be very, very compassionate and cognizant of the extraordinary difficulties of what they are going through. Of course the best way to do that is to taste of it voluntarily… to look honestly at our self… consciously… voluntarily.

Yee Hah! Ouch! Oy! Oy! Oy!

Then we can know how they feel.

Ativan anyone?

Michael

[finn11707]

req red--"much of what is said by dying people, by poets and in religious literature is enigmatic… allegorical… metaphor. one has to intuit the meaning behind it. but one thing is not metaphor at all… it is cold, hard fact. and that is what you & allow mystery were discussing; i.e. forgiveness of self and others."

so req reader, may i ask you to expound further on this subject of religion and the metaphorical/allegorical like interpretation led by poetry and religion. if one forgives another, led by a self-accepted understanding of "the devil made me do it..." is it truly a forgiveness of self and others that can bring peace in living relationships and in those dying? we all have heard of death bed conversions; end of life acceptance of god's forgiveness, and so self forgiveness, even after many years of living a very hurtfully and 'wickedly'. in the end, when eyes are opened by life review and the nearness of death, can all the pain associated with a life of troubled relationships just fall away? what about those left behind?--the injured or abandoned family and friends?

seems to me i have seen quite a few troubled end of lifers who had led a devoted religious life, but seem quite troubled, frightened and even questioning of their faith at their end. how can the fix bring relief to 'the wicked' in just a moment of awareness and acceptance, yet trouble and attach suffering to that 'faithful servant' of god?

oh the human mind and what we do to ourselves!

yes, i do believe religion can be an addiction in life to some; a saving grace to others. a way to wall off real connection and relationship to others, or a way one can believe they have something of worth to offer others. in the end, i see it is often a cause for individual deep searching...perhaps it hindered a real knowing of oneself? to go deeper into the pain of living and experiences and find acceptance and forgiveness. too much of a buffer of any kind is not good for the soul i fear. and now i am rambling...

yes, extraordinary amounts of call for compassion and cognizance --for our patients and ourselves.

the gift by r.s. thomas

some ask the world

and are diminished

in the receiving

of it.

you gave me only

this small pool

that the more i drink

from, the more overflows

me with sourceless light.

[req_read]

finn…

One of the primary reasons why dying process fascinates me so much is because it separates the wheat from the chaff… it shows what life styles and coping mechanisms work and which ones don’t. That being said, figuring out what a person actually thinks or believes, as opposed to what they merely SAY they think or believe, can be extraordinarily difficult.

Somewhere back in this thread I mentioned a family member who was a life-long church goer who confessed to me he did not believe in life after death… the old “when you’re dead you’re dead” story. That was my father. His sister and her husband told me the same thing (they have all died in the last year.) They were all intelligent, educated, successful and respected life-long church members. Any pollster conducting a survey would have classified them solidly under the heading of “Christian.” However, not one of them believed perhaps the most basic tenant of the Church they had attended religiously all of their lives. So you cannot tell what a “Christian” may or may not believe… deep down… by simply asking. I also mentioned previously a Church minister who confessed to his son that he did not even believe in God (his son told me.) So when people speak in generalities about what “Christians” think, I know from first-hand experience that there are about as many interpretations of Christianity as there are Christians. There are also social groups that call themselves a “Church.” But to actually study… seriously… human consciousness and spirituality? That is something anyone can do, anytime, anywhere… and some of the richest ground in which to conduct such a study is with dying people.

Actually I did attend Church services last Sunday (for the 1st time since I can remember) because my stepmother sang a solo… but I have no plans for a repeat performance any time soon. As my wife & I entered the Church we were beset by some gal who was determined to get our email so she could send us all of their program postings. Oh brother!

My father attended Church every Sunday, but did not believe he would survive death. I do not like Churches and seldom set foot in one, but I am absolutely convinced I will survive death… and that Christ is very special… in some way that from my current perspective I cannot grasp (notice I said “is” special, not “was” special.) However, it is rare to run into a self proclaimed “Christian” not loaded down with hidden agendas. I have often said, “Christianity would be a fine religion… if not for all the hairy-legged Christians.”

I am a student of human behavior… which inevitably includes the rather broad subject of addiction. We talk about “addicts” as though it involves “them,” not “us,” and certainly not “me.” Just like we talk about those who will die as “them” and not “me.” That attitude fairly guarantees a lack of understanding. We are all bozos on this bus. We all have our addictions. If you don’t know what yours are, then you are not paying attention… not very self-aware. We all have them, but yours might not work for me… nor mine for you. We have very definite preferences about our addictions. What works for you might be my worst nightmare. And it’s funny… an awful lot of the contentions and frictions between people has to do with their different tastes in their preferred addictions… their drug of choice. You would have to hold a gun to my head to make me go to Church every Sunday, and if that happened, I would go stark raving mad! It just doesn’t work for me. But it does for lots of people… my sister for one. Go figure.

But when I was working directly with the dying and their families I was fascinated with finding out what they thought… what they REALLY thought, not just what they said… and how that played out in how they died. Anyone can say, “I believe in life after death,” but when you are with someone when they die, that is when you find out the truth.

So how does one distinguish between an “addiction” and a mere “preference?” One way is to discern whether that person thinks of the object of their desire as something that makes them immune to their emotions or simply helps them deal with their emotions. Heroine can make a person immune to feeling sadness and fear (for a little while anyway). And if a person keeps using heroine for that purpose, they are addicted. Ativan, on the other hand, can help a person get through their feelings of fear and sadness. During the Terri Schiavo (sp?) debacle we all saw preachers coming on the news declaring such absolute balderdash as, “Christians do not fear death.” Oh brother! Now THAT is addiction! Bald addiction. It is no more enlightened than declaring that drunks don’t fear death (which I suppose may be true… as long as they stay drunk.)

But sooner or later the mask comes down, the truth comes out, and the results can be truly shocking.

Finn… you touched on quite a few topics but I already have a reputation for being long-winded. Zero in on one at a time.

Nice poem by the way. You are a collector of poetry… I collect quotes. It is one of my preferred addictions… that and song lyrics… which is a form of poetry I suppose. These things create a momentum… rather like playing ‘snap the whip’ as kids. You get a long line of kids whirling about, then “snap the whip.” The kid on the end gets hurled off… away… beyond the limitations of the group… beyond the limitations of language… into pure knowing.

The dying speak this language… if you listen. Poetry and the dying… now that’s a pair to draw to!

Michael